Surgery is at 12:15 tomorrow (Weds) with arrival at 10:15 in pre-op. We left the Port accessed from ERT (infusion) on monday so that part is taken care of unless the anesthesiol. decide they want to also use a Peripheral IV which some do given the pre-dosing with both antibiotics and solu-cortef (aka stress dose cortisol replacement).
I had emailed Dr.Bragg, my neurosurgeon last week but knowing she was out of the office and might not get the email. She replied back today (love that about the providers of mine who will use email!) in response to 2 questions I had. I had asked her if she thought we should do MRIs while the drain was in to make sure CSF is flowing corerctly and no compression and also if the external lumbar drain worked would we do the 2nd shunt placement right away this admission a few days after this drain placement or would she do it at a future surgery-admission. She felt that it was better to remove the external drain and even if we see benefit from it/symptom resolution given the risk of infection (and my previously having had a CSF infection back in Nov/Dec for which we had to take out both shunts and replace the VP shunt + 6 weeks of oral antibiotics) we should do the 2nd shunt placement at a future date and I guess we will figure that logistics out if this works. She plans to leave the external drain in for 2-3 days.
This is both good and bad - bad because it would mean having to do another pre-op physical (simple enough but still takes time and yes, I can piggy back it with something else but it's still another appt) as well as another admission and surgery. Maybe I am getting ahead of myself since we dont know that the external drain will even work I guess its more that as a patient I hope to be done with this soon and done with having to bother my neurosurgeon (not that she ever says anything and we do get along well and she truly seems to care as does her team) . In that mean time of course if the drain does work I would feel better, then feel worse then feel better again. Yikes!
On the good side of it is that Dr.Bragg obviously has been thinking about this and cares to think of the little details like out past surgeries and issues and cares about trying to prevent infection/infection risk as well as not overwhelming my body. I can and do appreciate that about her.
Overall I guess it will just be a 'lets see how it goes' kind of week with this external drain and i'll take the rest from there. With the VP shunt in place we do get some symptom relief and benefit. -- Otherwise today I was supposed to see my Pulmonary dr at FMLH but rescheduled that as I was purely exhausted (even with going to bed earlier than normal the previous 2 nights). My PCP and Cardiologist want her opinion on the breathing issues see if she can add any thought and I am curious if she has any suggestions for these episodes (which we think are cardiac) of feeling like I just am not getting enough air/difficult to get air in enough. I currently take the beta blocker and lasix (water pill) partially for this as well as Xopenex an inhaler at night and when needed during the day. Other things coming up which ive rescheduled for this surgery include with the new Orthopedic dr the end of the month, the Neuro-Opthalm. and then various other appts like Cardiol. which are otherwise just scheduled. We will see!
I'll update sometime tomorrow or soon after.
Erica
Tuesday, April 17, 2012
Friday, April 13, 2012
Minor musings
Tuesday's Nuclear Med Cardiac Study seemed to go ok although admittedly not the greatest or longest ability to walk/run and actually more due to hip/knee and low back discomfort than due to actual cardiacc symptoms. Ironically yesterday I had alot more symptoms cardiac wise without any test than I did on tues with the testing. PET scans where used before the test an hour after dye was injected and then I did the stress test and 30 minutes later after further dye I did another 9-10mins of pictures. I follow up with my Cardiologist in May so if I dont hear results before then (I dont really expect them to be abnormal) i'll get the NM-Cardiac stress test results at that appt in May. Sometimes testing results like the sleep study where released on mychart so that may also happen and I will get a copy of the medical record. So one way or another I will post the results is the long winded point I am getting at! :)
**Test results where released on mychart and appear to be normal which actually isnt unexpected. Ejection Fraction (or how well the heart pumps) was 60% which normal is 55-75% and circulation was normal throughout the heart on the pre and post-exercise scans. I fup with Cardiol. in May and neither of us expected this to really be abnormal but non-the-less he wanted to fup after the test and cont to keep an eye out on overall symptoms. I dont know what this means for overall symptom/valve issues other than we know coronary arteries are so far ok.
Yesterday the one of the nurses from the neurosurgery floor called and did the admitting quesitons (usually takes about 15mins) and then today Pharmacy called to go over meds I am on although we both had to laugh (in as much as you can laugh at this) that I was just there 2 weeks ago for the last surgery. = / Ironically in such a short time as proof I suppose of the craziness and ever-changing nature of my health care I have had med changes in that time. If you where to look at my med list it looks quite long (due to several PRN meds) but as I was sorting out my nightly meds earlier tonight I I couldnt help but appreciate that atleast on a routine basis I at night only take 3 regular meds (lyrica, bisoprolol, topamax) and 3 supplements (fish oil, zinc/copper, biotin) and then 1 pain patch I change every monday and 2 meds (lasix, MSIR) I take in the morning. Then I take Xopenex PRN which has been more often lately at night and vesicare is written for every night but I take PRN. Anyways that is still alot of meds but there have been times it has been worse.
As I was getting the IV contrast on tues for the cardiac stress test/nuclear study and then during the actual test I couldnt help but think again about how uncomfortable things like that make me. Having someone else who clearly is just doing their job but be so close to you and asking questions about my life some of which are things I am asked a million times over (or so it seems) and others related to the test and that I think most people wouldnt find that uncomfortable. I couldnt help but just think how distinctly noticeable it was to myself my discomfort at much of it but it not being physical but instead just because ive in all these years still never gotten used to someone being in my space. I know that sounds ridiculous and it is ridiculous really and I know it is far worse for me (this feeling) when I am over tired or havent slept well in days or have the headaches and it is people I dont know or dont know that well. There are some providers I dont have a problem with talking to or atleast I can talk much more comfortably with male or female I suppose because I know them reasonably or somewhat well and then there are some providers I have no problem talking to but I still if I had a choice would keep them at arms lenght away (so to speak) although I suppose its more because as much as I talk about my life and sometimes really personal things here no one is touching me and I get to chose what I write about. I cant give a rational explanation for why many things health care still make me uncomfortable but they sure do! And along with being worse when I am tired I also find it harder when other people are around - I mean stupid things like to ask a question or bring up a basic topic; a topic that wouldnt be that big of a deal. I often think to myself I cant even imagine what peole with Asphergers feel bc I would like to crawl out of my skin sometimes and I am just quote, un-quote "normal". Again I dont know if it makes sense! It sort of makes me laugh that id be the one that ended up being in these advocacy positions and having given talks that is for sure. I think in those situations though you can get lost in whatever it is you are talking about or what is being talked about and even if I am talking about myself to a group of people it's less personal than if it's 1 or 2 or 3 people?
I think one question I really hate I guess because I feel guilty still (why I dont know) is when people ask me what I do for a living and I reply that I am on disability and do the advocacy work on the side. Even though I do know my life is busy and I keep busy with the various activities I have going on in addition to helping with my nephew on top of managing all of the stuff that goes along with having MPS ( multiple insurances, paperwork, appts, coordinating/scheduling and time spent going to and from as well as at appts/ERT) it still feels like because I 'look' normal I should be able to be more normal. I know what is normal anyways and how can anyone expect to understand another persons life (they cant but plenty im sure still think they do) or why do I feel guilty when I know I am still doing quite a bit in society and managing a life despite not always having alot of control. I think I just have a hard time not feeling guilty because I know I look pretty normal on the outside and to people who dont know me (and plenty who do) I dont look like I really have anything wrong. I dont really have a good explanation for why I hate this question.
Anyways, enough rambling from me - i'll update next week either with surgery time or if anything changes with the Pulmonary appt on tues. (my Cardiol and PCP would like my Pulmonologists opinion to see if she has any suggestions on things we could be missing breathing symptom wise other than the cardiac issues).
Erica
**Test results where released on mychart and appear to be normal which actually isnt unexpected. Ejection Fraction (or how well the heart pumps) was 60% which normal is 55-75% and circulation was normal throughout the heart on the pre and post-exercise scans. I fup with Cardiol. in May and neither of us expected this to really be abnormal but non-the-less he wanted to fup after the test and cont to keep an eye out on overall symptoms. I dont know what this means for overall symptom/valve issues other than we know coronary arteries are so far ok.
Yesterday the one of the nurses from the neurosurgery floor called and did the admitting quesitons (usually takes about 15mins) and then today Pharmacy called to go over meds I am on although we both had to laugh (in as much as you can laugh at this) that I was just there 2 weeks ago for the last surgery. = / Ironically in such a short time as proof I suppose of the craziness and ever-changing nature of my health care I have had med changes in that time. If you where to look at my med list it looks quite long (due to several PRN meds) but as I was sorting out my nightly meds earlier tonight I I couldnt help but appreciate that atleast on a routine basis I at night only take 3 regular meds (lyrica, bisoprolol, topamax) and 3 supplements (fish oil, zinc/copper, biotin) and then 1 pain patch I change every monday and 2 meds (lasix, MSIR) I take in the morning. Then I take Xopenex PRN which has been more often lately at night and vesicare is written for every night but I take PRN. Anyways that is still alot of meds but there have been times it has been worse.
As I was getting the IV contrast on tues for the cardiac stress test/nuclear study and then during the actual test I couldnt help but think again about how uncomfortable things like that make me. Having someone else who clearly is just doing their job but be so close to you and asking questions about my life some of which are things I am asked a million times over (or so it seems) and others related to the test and that I think most people wouldnt find that uncomfortable. I couldnt help but just think how distinctly noticeable it was to myself my discomfort at much of it but it not being physical but instead just because ive in all these years still never gotten used to someone being in my space. I know that sounds ridiculous and it is ridiculous really and I know it is far worse for me (this feeling) when I am over tired or havent slept well in days or have the headaches and it is people I dont know or dont know that well. There are some providers I dont have a problem with talking to or atleast I can talk much more comfortably with male or female I suppose because I know them reasonably or somewhat well and then there are some providers I have no problem talking to but I still if I had a choice would keep them at arms lenght away (so to speak) although I suppose its more because as much as I talk about my life and sometimes really personal things here no one is touching me and I get to chose what I write about. I cant give a rational explanation for why many things health care still make me uncomfortable but they sure do! And along with being worse when I am tired I also find it harder when other people are around - I mean stupid things like to ask a question or bring up a basic topic; a topic that wouldnt be that big of a deal. I often think to myself I cant even imagine what peole with Asphergers feel bc I would like to crawl out of my skin sometimes and I am just quote, un-quote "normal". Again I dont know if it makes sense! It sort of makes me laugh that id be the one that ended up being in these advocacy positions and having given talks that is for sure. I think in those situations though you can get lost in whatever it is you are talking about or what is being talked about and even if I am talking about myself to a group of people it's less personal than if it's 1 or 2 or 3 people?
I think one question I really hate I guess because I feel guilty still (why I dont know) is when people ask me what I do for a living and I reply that I am on disability and do the advocacy work on the side. Even though I do know my life is busy and I keep busy with the various activities I have going on in addition to helping with my nephew on top of managing all of the stuff that goes along with having MPS ( multiple insurances, paperwork, appts, coordinating/scheduling and time spent going to and from as well as at appts/ERT) it still feels like because I 'look' normal I should be able to be more normal. I know what is normal anyways and how can anyone expect to understand another persons life (they cant but plenty im sure still think they do) or why do I feel guilty when I know I am still doing quite a bit in society and managing a life despite not always having alot of control. I think I just have a hard time not feeling guilty because I know I look pretty normal on the outside and to people who dont know me (and plenty who do) I dont look like I really have anything wrong. I dont really have a good explanation for why I hate this question.
Anyways, enough rambling from me - i'll update next week either with surgery time or if anything changes with the Pulmonary appt on tues. (my Cardiol and PCP would like my Pulmonologists opinion to see if she has any suggestions on things we could be missing breathing symptom wise other than the cardiac issues).
Erica
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